The 10 Most Difficult Things About Dealing With Arthritis

The 10 Most Difficult Things About Dealing With Arthritis

Recently the Foundation posed a question to the Cure Arthritis community: What’s the most difficult part of dealing with your arthritis? From the physical to the emotional, our supporters gave some valuable insight into the everyday lives of the arthritis patient. We’ve compiled some of the highlights of their responses below and ranked the 10 most common responses.

– 1 –

Fatigue

Defined as extreme tiredness, typically resulting from mental or physical exertion or illness.

“People underestimate true fatigue. It impacts every aspect of my life. I’m too afraid to drive more than 10 minutes now. I can barely go out for a couple of hours without needing a nap and I’m reliant on 6 pills a day, specifically designed for my fatigue, just to keep me half way functional. I am constantly exhausted. I can easily sleep for 24+ hours at a time but I’ve slept for 36 before too and even then I’ll still wake up tired. I don’t remember what it’s like to not be exhausted every single minute of every day.”

– Miranda Gerber

“I can deal with the pain – but being exhausted all the time makes fighting the disease that much harder.”

– Abigail Wiernik

– 2 –

Pain

Defined as physical suffering or discomfort caused by illness or injury.

“My mind has all these ideas of places it wants to go, activities it would like to do, shoes I would love to wear, etc. and the reality is my body won’t let me do them because of pain. The best metaphor I can give is I feel like I am sometimes chained to the pain…like you’re a prisoner to it. You can’t break free, no matter how hard you try.”

– Lauren Brooke

“There is so much I want to do, but the pain drains me physically and, ultimately, mentally.”

– Robin Selzer Littman

– 3 –

Parenting And Family

Often we forget that we aren’t the only ones dealing with this disease.

“It’s when my kids say things like, “Don’t bother mom today, her back hurts” or “Mom, do you feel well enough today for us to go to the park?” My kids shouldn’t have to worry about the health of their parent, just about being a kid.”

– Amanda Cardona (@cardona_amanda)

“The heartbreak of not being more a part of my family’s life. Watching them play, laugh, have fun and me sitting, doing nothing. Hearing from my kids that it’s not fair that I can’t play with them. Feels like they’re growing up without me.”

– Cindy Rodriguez (@cindy.r.17)

“Feeling like I’m not doing everything I can for my kids. On the days when the pain is too much, I get so upset thinking I’m not being the mother I should be. They are happy and healthy kids so I know I’m doing everything right, despite my arthritis.”

– Tara Fasulo Laity

– 4 –

Unpredictability

How am I supposed to make plans if I don’t know when I will feel well or not?

“The most difficult part is the unpredictability, never knowing when a flare will hit and knock you back. Not knowing how much you can accomplish on any given day. Not knowing if I should go ahead and make those plans even though I don’t know how I’ll feel. It’s so hard to balance a life when I never know if I’ll even be able to show up for it on any given day.”

– Tia Maria (@becominneurotic)

“I feel like once I get used to the new status quo, something new pops up to take me by surprise, so I’m hurled into grieving another loss all over again.”

– Heather Aspell (@haspell)

“The surprises. I quit saying my disease had found the worst part to attack because it felt the need to one up itself every time, creating surprises I did not want. These are not the gifts I asked Santa for at Christmas, please return to sender.”

– Bianca Albone (@captainangrybones)

Patient Quotes To Share

(Click to Enlarge)

– 5 –

Judgement

As if feeling terrible isn’t enough, I have to worry about other’s perceptions too!

“People are super judgmental about how you got it, treat it, and think about it.”

– @Meeshmarie

“Oh, where to begin. Maybe it’s the endless barrage of dirty looks when I park in a handicap spot. Or when I have to use a scooter at Walmart or Target just to get around, but I seem “able-bodied”. Maybe it’s being told that I shouldn’t use MY OWN handicap placard because there is just no way that I’m actually handicapped.”

– Christie Sledge

“Just because it’s invisible doesn’t mean it’s not real. People who don’t understand and judge you are the most difficult part of dealing with my illnesses.”

– Carmen (@lil_ra_warrior)

– 6 –

Physical Limitations

I try my hardest to be “normal,” but unfortunately there are limitations that are out of my control.

“It kills me when I’m in the gym and there are more lifts as I get older I can’t physically do. Some days I’m ok with it…Other days, I see down the road and I’m doing less and taking more pain medicine to get out of bed. It destroys me a little more every day cause it took my other passion away: Martial Arts/MMA”

– Todd Norwood (@toctodd)

“The most difficult part for me is never knowing what morning I will wake up to such painful and swollen hands and fingers that I cannot do simple things like wringing out a washcloth, open jars, turn door handles, and a multitude of other things. It may be like this for weeks and weeks, and then I have a morning that it’s not so bad.”

– Karen Bevel

– 7 –

Cancelling Plans/Missing Out

I want to be social and see my friends, but sometimes I just can’t physically do it.

“Outside of the agonizing pain, I think missing out on social events with friends & family over the years. I also had to put some professional interests on hold because of Ankylosing Spondylitis…So, just ‘missing out on life’ in general from 22-25 feels like a setback.”

– Trever Joyeux (@Islandertj)

“Not being able to plan ahead due to asking myself ‘will I be in pain that day’? If not and I go out, will it hit me out there?”

– MaryAnn Powell

– 8 –

Lifelong Sentence

How am I supposed to do this forever? We need hope!

“Knowing that for the rest of my LIFE I will have this RA really does a number on me.”

– Ryan Schae Kiehl (@ryanschae)

“The hardest part for me is the fear that I will have to take three shots a week for my entire life.”

– Lilly Wortham

– 9 –

Asking For Help

I want to do it myself, I want to be able, but sometimes that is not possible.

“The hardest part is admitting, to myself and others that I need help…While I would like to continue to “do it myself,” my body simply won’t let me some days, and I must accept that.”

– Maddie P. (@mpgrace17)

“The hardest part for me is learning to slow down, listen to my body and accept that it is okay for me to ask for help.”

– Emma Gilmour (@emezra)

– 10 –

Accepting My New “Normal”

Pain is my new normal, but I don’t want it to be.

“Not being the same strong woman that I use to be!”

– Kristi Martin Frye

“Because you are always in pain, you start thinking it’s normal. It’s not! But it’s sad; we get used to it…”

– Isabel Lanssens (@lanseke)

“Not being able to do what I used to consider normal.”

– Maria Fairfield

Patient Quotes To Share

(Click to Enlarge)

The Foundation would like to extend a special thank you to everyone in the #CureArthritis community who were vulnerable and shared their experience with the community. You are why we continue to fund research to cure arthritis!

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Article Author
Arthritis National Research Foundation

derek@curearthritis.org

The Arthritis National Research Foundation's mission is to provide initial research funding to brilliant, investigative scientists with new ideas to cure arthritis and related autoimmune diseases. Writing articles about the patients affected and the science being done to find a cure shows why we need to come together to #CureArthritis!

4 Comments

Lance Trottier

For me, it’s all of the above, yes… it’s not a matter of “am I in pain today”, but rather, ” to what degree of pain am I in today”.
I was diagnosed with RA approximately 10 years ago. I have RA throughout my body, not limited to one or two or three places (so, it’s also a matter of, “what part of me is getting hit hard”.
In the process of diagnosis, in going over my medical history, it was determined that I am also a somewhat rare case of childhood RA… back in those days, they didn’t know anything about it, and we simply didn’t go to the doctor unless something was life-threatening.
As indicated in the article, it comes most times without warning, with any number of things that trigger a flare up…. I slept in the wrong position, I overdid it the day before, change in weather (especially an impending storm with moisture increasing in the atmosphere. Some days, it’s hard to do things with my hands. Some days, it’s hard to walk, whether it’s in the hip, or a knee, or my ankles, or feet in general… some days, it’s hard to lift, as it might be in my elbows, or a shoulder. Or it might be in my neck.
But, day after day, I wake up…. I trudge on…. I do my best to keep moving through it all.

Priscilla Torres

I love to crochet and I have several projects I am working on. Problem is that my hands and fingers get into so much pain that I can’t continue. I did not understand why I am always so tired and sleepy. After reading these comments I found out that my severe aches and pains are from the arthritis. Thank you all for sharing. I hope my daughters read this so they’ll stop pestering me that I don’t exercise enough.

Melba Walton

I am 76 years old. I’ve lived with RD for over 50 years. The monster has not won yet. RD is not done with me yet.
50 years and every single day has been painful. Everyday facing the physical and psychological struggle of just getting out of bed makes me heroic. ARTHRITIS IS NOT FOR SISSIES.
We, and other chronic pain warriors, know how incredibly strong we have to be; how incredibly persevering against our will. I look back on my life now and feel as though I have survived daily beatings, and then repeatedly raped..
Please stay with me: please give me a chance to tell about the healing.. I began this with the unbearable as did my RD in the 1960’s – I will be far more kind and compassionate as I write on.
In 1966 three months after the birth of my fourth child I was diagnosed with RA. The Medical community had very few options for me then. I managed to find a physician because I lived in the SF Bay Area. The meds available in the 60’s were aspirin,ACTH, and prednisone. The hot paraffin treatments felt good on my wrists. Irregardless over a period of months both wrists painfully fused themselves .
Lesson number one for me – Even with a family and now a baby to care for this monster was going to be relentless. I was going to be strong. It was all I could be.
My medical and psychiatric history is remarkable. I’m working on memoirs. The thing is lots of progress has been made and research continues. All I know for sure is that some force keeps me going to doctors who patch me up with vinegar and brown paper and still I have pain and ‘poor me’ bouts daily. I also have a tremendous amount of courage. I have insatiable curiosity. I continue to get out of bed with pain, fatigue and fear but perhaps a bit less begrudgingly than 50 years ago. Thanks for reading this.

Ann b wall

It’s is heartbreaking to hear the suffering so many have endured. Each person has there own methods of coping. It’s 7 yrs for me and I have learned to be grateful for all the positive blessings I have. Wonderful doctors, supportive family , a job even though my abilities are diminished and it’s part time with disability. My arms and legs. The ability to walk to see to dream. I have learned to be more compassionate to anyone struggling -ill or not.. I am blessed with all of you in the Arthritis and autoimmune community. The warriors that run, walk wheel for a cure. Keep on